Lucy's story
37 weeks, 2500 grams
Lucy was an unexpected natural conception following prior infertility.
After a trouble free pregnancy Lucy was born by caesarean section on her due date (a breech baby). At birth she was diagnosed with Trisomy 18 (or Edwards Syndrome).
“She was noted to have some unusual facial features, including a wide anterior fontanelle and small eyes with part fusion of the right eyelid. Her ears were small and low set and she had some overlapping of her fingers and prominence of her heels. This collection of features was suggestive of Trisomy 18 (or Edwards Syndrome) and this was confirmed by a karyotype investigation studying Lucy’s chromosomes……..”
A huge surprise as we were expecting an 8lb baby and out popped out a tiny 5.5lbs (2500 grams). The entire operating theatre was in shock and I will never forget the silence as they worked on her and me.
And so began our incredible journey of self discovery, love, humility, and above all the amazing strength of the human spirit. Our precious wee girl hung on by her fingertips!
Given only hours or possibly a few days to live, we had her christened and gathered the family around to wait for her to die. But she didn’t!! Instead she elected to start breathing by herself (we had taken her off oxygen to let nature take its course as she had deteriorated badly), so after a few days we decided to take our daughter home and finish the process in our own environment.
The Neonatal Home Care Team were fantastic, visiting daily, teaching us to feed through a nasal gastric tube once I had expressed, and generally being our support crew along with the many, many friends and family that swamped us with love, food, shoulders to cry on and overwhelming support.
Lucy continued to defy the odds and hung on for a glorious six months, still only 5.5lbs when she died. We miss her desperately (her older brothers Brayden and Curtis especially) but were so very blessed to have the time with her – we called her Lucy Lawless, our wee warrior princess, she was the most courageous person I ever knew.
Despite the outcome which is every parent’s nightmare, it was an amazing time. Being housebound for six months (she could not be transported as she was too fragile) was also a heart-warming experience as we lived day to day just being thankful that she had made it through each night.
We were so grounded. We have enjoyed flitting around a bit over the years and to do nothing for six months except be together at home as a family was awesome.
Lucy touched the hearts of everyone she met. For such a small child she had an enormous personality – we are so thankful to have seen her smile, bond with her, watch her reach milestone after milestone, and to love her unconditionally. It was a privilege to be her parents and we will cherish her memories for all time.
Lucy Charlotte Whale 21.06.02 – 15.12.02 Our wee star.
Thanks so much for sharing your personal story!
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you.
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If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate via the link below.
- The Little Miracles Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
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